Unpeeling the developmental onion

Seeing Hannah and Isabelle standing up next to each other, moving around the house together, is amazing. I don't know who's more excited: them or us. Hannah has been doing SO great with pushing the wagon (she's a little less interested in the walker but as you can see in the picture, she does tolerate it for a little while). I never thought we'd see this day. For such a long time she was too tentative and cautious and disinterested in doing it, and now we just put her behind it and off she goes!

I think when you parent a child who achieves milestones much slower than other kids their age, you are so much more aware of each individual step in the developmnental process. It is painfully slow and trying on even the most patient of people, but it is also magical and mystical and makes you really appreciate how incredible it is that our bodies and minds can do what they do. With Isabelle, we like all parents and were so excited by each step of her development and cheered her on along the way (we still do!) But with Hannah, it's like a slow-motion version that magnifies all of the separate pieces that must come together in order for her to achieve a motor milestone. And not only do we see each one of those pieces so clearly, but we can also see the ripple affect of that achievement because it has been such a long time coming.

Two specific examples: First and most obvious is the sheer and complete joy the girls express when they are both up and about as they are in this photo. They squeal and giggle and are so incredibly excited that finally they can share the perspective of being upright and standing. But another example unveiled itself to me today while Hannah was pushing the wagon into the dining room. When she got next to the staircase, she stopped and put her hand on the banister, tapped it and said, "What's that?" We walk by those stairs several times a day but always with someone holding her and so she knows what the railings of the banister are, but not from the perspective of someone standing upright and walking by it.

How incredible that she is going to start experiencing her world in a whole new way, and because her language skills are so far ahead of her motor skills, she can tell us what that is like. I am so grateful for the opportunity to watch this all unfold.

Making strides

Here's our girl getting more comfortable with pushing her wagon (you can see Isabelle getting into the act as well). Radio Flyer makes an excellent one for beginner walkers because it is heavy and has little clickers that help the wheels from going too fast. We've had this since the summer and for awhile, all Hannah would do is take a step or two with it and then either it would go out from under her or she would just stop walking and ask to do something else. Then we went through a stage where she would not even want to go near it or any other push toy, and only wanted to walk around holding onto our hands.

Finally about a month ago, she started to really get the hang of pushing it. This video doesn't really do her efforts justice; she can now make it across the length of the house at a pretty good clip without assistance. She drags her left foot and walks on her tiptoes, and it still gets out from under her sometimes, but she's moving forward on her own and that's just HUGE. We're so proud of her!

Grieving

Click here to read this post written by Billie, mom to 24 weekers with cerebral palsy. Her timing in writing this is eerie, as I've been thinking so many of these thoughts myself lately and wondering how I might put them into words. Now there's no need, as she really captured perfectly how I feel about our experience raising Hannah and Isabelle. Thank you, Billie, for this gift.

Battle scars

You’d think after Thanksgiving I would be feeling grateful. And I am, really. For so many things. But that’s not the post I feel like writing right now. For whatever reason, here’s my “woe is me” post. Overall, I feel like I am in a much better place today than I was even just a few months ago regarding the girls' birth and Hannah's developmental delays. But just like the girls have some scars from their time in the NICU, I have mine too. Here are some of them:

I’m not the same person I was before this happened. No one is the same after having children. But parents of children who experience life-threatening illnesses or long-term disabilities have to work a lot harder to reclaim their sense of self in this new reality they’re faced with; a reality that isn’t at all what you expect when you sign on to have kids. I’ve been trying hard to reclaim some of my light-heartedness, spontaneity, sense of adventure and fun, but those qualities are buried underneath layers of worry and fear. It’s hard for me to relax, I get panicky about things I never used to get panicked about, and when it comes to the girls, it’s not easy for me to “roll with it” when our schedule gets disrupted. I constantly worry about their nutrition and sleep, especially with Hannah, for whom those things are critical for her to have the strength to work on her motor skills. It’s getting easier as they get older, stronger, and more independent. But I am forever changed by our experience.

Because of Hannah’s more intense needs, I always feel like I am not doing enough for either of my girls. I feel like I’m never doing enough for Hannah, in terms of at-home physical and occupational therapy. There is a never-ending list of activities, games, stretches, muscle groups, ideas, goals to work toward. And there is a clear limit to the amount of time we can spend on these things, as our day is usually taken up largely with dressing, eating, changing diapers, and trying to get out for some kind of fun diversion. And then there are the times when Hannah is sick, or teething, or didn’t get enough sleep, and trying to get her to work her body in difficult ways is near impossible.

And I feel like I am never giving enough to Isabelle, who because she is independently mobile is often left to her own devices as I figure out ways to manipulate Hannah or the environment so that she can fully participate. Take story time at the library for instance: All the kids get up and do ring-a-round-the-rosy, holding hands with their caregivers. I’m stuck: how do I hold both of Hannah’s hands so that she can stand up, and at the same time, hold one of Isabelle’s hands so that she can learn how to do it also? Inevitably, Isabelle is the one that ends up flying solo, left to figure it out for herself. After the first time we went to story time, I came home and cried to B that I couldn’t even teach them ring-around-the-rosy.

Because only one of the girls has motor delays, I’m constantly reminded of how different Hannah is. When I pick Isabelle up and feel how soft and flexible she is, it makes Hannah's stiffness and high tone that much more obvious. When I watch Isabelle move effortlessly from sitting, to kneeling, to standing, to walking, I can see so clearly how all of those transitions are either very difficult or near impossible for Hannah to achieve. When we go to a restaurant and Isabelle can hold herself up in the high chairs they provide you with and we need to prop Hannah up with sweaters or jackets and tell her to sit up straight so she doesn't lean all the way over to one side, I notice how weak Hannah's trunk muscles are. When we’re at the playground and Isabelle takes off for the slide and Hannah has to wait for me to take her where she wants to go, I’m painfully aware of how dependent she is on me for mobility.

I’m angry that this happened to us. It’s bad luck, and it’s just not fair.
It’s unfair to Hannah that she has to watch while her sister does what she so desperately wants to do: move independently and purposefully through her environment. It’s unfair to Isabelle that she often has to watch patiently while I, or one of Hannah’s therapists, give her sister the individual attention and assistance that she would probably love to have as well.

And it’s unfair to me. I don’t want to have to leave the playground where Isabelle is having a ball because my back is killing me from walking Hannah all over the place. I don’t want to avoid music class because I’m not sure how I’ll handle having one non-mobile child and another mobile one, both of whom will want and need my assistance and attention so that they can really enjoy the experience. I don’t want to have to think about any of the issues I need to think about that will never cross the minds of parents of typically developing kids.

I just wish this could all be easier. That we’d wake up tomorrow and Hannah would be walking, climbing, running. And all would be well in the world.

Two years ago tomorrow, the girls came home

November 16, 2003 was the day we took the girls home from the hospital for the first time, 2 months after they were born. We were so excited, nervous and I think shell-shocked about the fact that finally, after all of that time, we would all be sleeping in the same house, a complete family at last.

No more calls to the NICU before bed to ask the night nurse to say goodnight to the girls for us, or again first thing in the morning to see how they did overnight and what their weight gain was. No more racing to the hospital to get there before the doctors rounded. No more waiting to ask a nurse if we could pick them up, feed them, bathe them.

Hannah and Isabelle were finally ours.

It's hard to believe this happened two years ago. It's some times hard to even remember what those first few days at home were like (total and complete sleep deprivation probably didn't help). But one thing I won't ever forget is our first night at home, when we sat on the couch with the girls in our arms and just looked at each other. "We did it." With the help of our family, friends, and the amazing staff at the NICU, and with one another to lean on, B and I survived those surreal first days, the heartbreaking afternoon when we learned of Hannah's brain injury, and all of the other mind-numbing minutes and hours that made up the girls' 54 day stint in the hospital.

Two years later, this experience is such a core part of our family history that it's hard to remember what life was like before this. And yet, our life has expanded so much beyond that. It is a much brighter place since our girls came home.

Happy homecoming, Hannah and Isabelle.

Country girls

You know you live in a rural locale when your daughters request Johnny Cash, recognize a combine harvester and ask to go to the farmer's market.

I love it!

It's that time of year again

Ah, the season of runny noses. This will be our third stint through RSV/flu season and each time, I enter it with high hopes. The first year, we were in full lock-down mode as the girls came home from the hospital right before Thanksgiving, so we banned visits from all kids and most adults until spring and the girls got narry a sniffle. Last year was our first full exposure to the joys of the season and we learned that the girls both seem prone to picking up anything and everything that happens to be floating around, and that, most likely because of their prematurity and still somewhat immature respiratory airways, colds that other kids seem to shake off easily settle into our girls upper and lower airways and hang around for awhile. Runny noses get worse, fevers start, and within a few days we're off to the doctor to make sure they don't need antibiotics or steroids.

All things considered, it could have been much worse, but all parents know that any time their kid is sick is not a good time. Parents of more than one small child under the age of 3 know that it can be pretty awful.

This year, we're already under way with our first major cold. The sniffles we had a few weeks back came and went so quickly that I got cocky: "Maybe last year, they built up their immunity so this year they'll come out of this much more easily."

Ah, the naivete of a first-time mom.

Well, the sniffles came back. And they stayed. Isabelle seems to be doing okay running around with booger-nose, but Hannah is another story. Her congestion just kept getting worse and worse, and now she is coughing/spitting up mucous, not eating, not sleeping well, and all-around miserable. Off to the doctor we went; thankfully this time, no steriods or antibiotics were needed, just lots of fluids, TLC and tylenol to make her comfortable.

I just hope it passes quickly: we're all stir-crazy and sleep-deprived and looking forward to this weekend's visit with Grammie and Papa for some reinforcements and extra attention for the girls. Thank God for family!

Overheard

Last night, around 7:15pm. Coming from the girls' bedroom.

Hannah: "Thank you, Isabelle."

Isabelle: "You're welcome, Hannah."

Isabelle: "And pasta, and zucchini. And, scallions. Scal-y-ONS."

Hannah: "Up above the sky so high."

Isabelle: "Like a diamond in the night."

The secret lives of twins...

Achieving independence

About six months ago, we started talking about the possibility of getting Hannah a walker to give her some independence while she was still putting together the pieces needed to learn to walk. For a long time, these discussions made me cry.

When Isabelle started walking at around 18 months (15 months "corrected"), B and I figured Hannah might be about six months behind. She still needed to master crawling, pulling to a stand, and cruising. The therapists reminded us that there were many things that needed to fall into place in order for a person to walk on their own. Not only the attainment of physical skills, but also body awareness, balance, and coordination, all of which seemed to be challenging for Hannah, as for most kids with PVL. We thought, "that's ok. She'll get there. It will just take a little longer."

Slowly we realized, Hannah's achievement of independent mobility was going to take awhile. Maybe a long while. And we started to worry. Will it happen at all? Will she need assistance (i.e. a walker, a wheelchair, etc.)? When and if she finally does walk, what will the quality of her gait be like?

Acceptance is a funny thing. As the "what-ifs" start to come true, you move through different phases of denial, anger, grief, resignation. Until finally, you get to a place of acceptance that this is where you are, and where you're headed. Not where you thought you'd be, or had any interest in going. But here you are. Trying out walkers and gait trainers and hoping that maybe, with a little luck, your kid will walk by the time she starts preschool.

I'm so glad I'm finally in the acceptance phase because frankly, it's a lot easier of a place to be. But it took a long, long time to get here. And occasionally I lapse back into that dark, sad place where I wonder why did this happen to us...and how easy life would be if only...and how will we get past this...

But mostly, I accept that this is what Hannah needs to get herself moving, and if we can find a way for her to gain some kind of independent mobility, at the end of the day that is what's most important. Especially to her.

So here is Hannah trying out her new walker. I think it's called a "reverse-K" and it has large wheels at the front and smaller ones at the back. It also has a support bar across the back that helps her to keep a straighter, more upright posture.

I think she likes it, don't you?

Hannah and Isabelle's birth story, Part II

I honestly can’t recall the first real glimpse I got of our girls. I have a faint recollection of noticing that, just as B had said, they were very, very small. The kind of small that you can’t really explain, or appreciate from pictures, but when you see it in person it takes your breath away. Fit in the palm of my hand small. I know that we didn’t stay long; I was in pain, exhausted, and out of it from pain meds.

I think it was the next day when I saw them again, this time with my dear friend Kristie, who had come to visit. I think that is when the “baby blues” hit and the shock wore off. I cried on and off most of the day. Kristie brought me up to the NICU to see the girls, and as she stood next to me and we looked down on them, I couldn’t stop crying and thinking, “I am so selfish. I forced my body to get pregnant and this is what happened.” I saw the girls with oxygen support, IVs everywhere, monitors for their hearts, O2 levels and body temperatures. I saw them greased from head to toe in Aquaphor and wrapped in cellophane so that their transparent skin would stay moist. I saw them hidden under a mask to protect their eyes from the phototherapy they were receiving for jaundice. I saw them naked, without diapers on, light fuzz covering their bodies. They looked like tiny birds that had just hatched and been unexpectedly tossed out of the nest.

In those first moments of really seeing them, I honestly wondered if they were meant to die, and we were keeping them alive selfishly and for our own good, rather than letting them pass on without suffering. They did not look like newborn babies, they looked like fetuses that should still be in the womb. What were we doing, using technology to have them in the first place and then to keep them alive. Was this truly meant to be? How premature is too premature?

And yet, with every fiber of my being, I wanted them to live. I wanted to touch them, nurse them, kiss their heads and fingers and toes. I wanted to tuck them into my hospital gown and spirit them back home. I wanted to go to sleep and have them back inside me, kicking and punching and moving around in their protective water bath with each other for company.

It wasn’t until the girls were two days old that I got to hold them, one at a time and for only a few minutes, tucked under my hospital gown and nuzzled up next to my naked skin. I was petrified to move, to disturb all of the wires and lines. They were so small that their bodies literally fit into the palm of my hand. I didn’t have much energy to sit with them for long, but the minute the nurse scooped them back up and returned them to their crib, I wanted them back again.

We spent the third day in the hospital trying to decide on a name for our second daughter, and paged through baby name books in between visits upstairs to the NICU, phone calls to family and friends, and catnaps. After some time, we decided on Isabelle Hope. Isabelle is a name we had discussed before, and Hope felt like a positive, life-affirming choice that was particularly appropriate now.

Hannah and Isabelle spent two months in the hospital and came home weighing approximately four pounds each. On many fronts, they sailed through the NICU amazingly well, escaping many of the horrors we had been told to be prepared for: life-threatening infections, heart malformations, inability to be weaned off supplemental oxygen, gastrointestinal problems. But unfortunately, we did not get off scott-free. One month after their birth, the girls had a cranial ultrasound to check for brain bleeds that are common in micropreemies (those born weighing less than 1,000 grams and earlier than 30 weeks). Hannah's ultrasound showed evidence of PVL, which put her at increased risk for being diagnosed with cerebral palsy, as well as learning disabilities.

Since their discharge, we have watched the girls grow with hope, faith, and bated breath, especially Hannah. Initially, they were on the same developmental timeline and meeting the milestones of other babies born at their "corrected" age (when they should actually have been born, which was 3 months later than their birth age. But as they grew and the fine and gross motor skill challenges increased, the gap between Hannah and Isabelle grew. First it was only a few weeks, then a month, then six months, and now it is more than a year. While Isabelle reached all of her motor milestones in an age-appopriate fashion, Hannah is developing some of those skills at a pace slower than a child at least one year younger than her.

Thankfully, on the social and verbal front, the girls are both right on target. This is a huge relief as preemies in general are more prone to learning disabilities and preemies with PVL are at an even high risk. It is hard to say if more subtle difficulties might arise when the girls are school-age, where some learning disabilities become more evident. But at this point, they are both typical two-year olds in this regard.

There have been so many challenges to adjust to since we had our girls: their early arrival, the fact that there are TWO of them, and Hannah's developmental delays. I hope to use this blog as a place to share some of our triumphs and struggles through this process, which has changed all of us in so many ways.

Hannah and Isabelle's birth story, Part I

By way of introduction to our story and some historical background, I'm going to post Hannah and Isabelle's birth story, which I finally got around to writing after almost two years.
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On a Wednesday in my 27^th week, I noticed some very light spotting. I went to the doctor and got checked: I was not dilated or effaced, and I was not having regular contractions. Everything was fine, but the doctor told me it was time to think about quitting work and going on modified bedrest. I agreed to make Friday my last day, and started making plans for finishing up any last projects and ensuring my maternity leave replacement was ready to assume my responsibilities.

On Thursday, I woke up feeling like I was coming down with something. I had a slight temperature and my stomach was upset beyond the regular indigestion that had been plaguing me for weeks. I put in a few hours at work, went home to rest, and then met my husband(B) for dinner before we went to our birthing class. I was increasingly uncomfortable throughout the day and could barely sit through class, constantly shifting positions and trying to find ways to take the pressure off of my stomach and back.

When we finally got home, around 9pm, I noticed more, heavier spotting. We called the doctor on call and explained that I hadn’t been feeling well and was spotting again. He said that if I wasn’t cramping, I should just come in first thing in the morning to be checked, since I had been in to the office the day before and everything was fine. I went to bed and slept fitfully, slightly aware of some minor cramping but not enough to wake me fully. When I woke at 6:30am, I called the doctor again to report that I was starting to cramp, and he said I should meet him at the hospital.

B had already left for work so he planned to meet me there. As I drove the 30 minutes to the hospital, I felt waves of low-intensity cramps pass through me. I can remember thinking, “this can’t be good,” and just tried to stay focused on getting myself there as fast and as safely as I could.

I got to the hospital at around 8:30am and B met me at the entrance and helped me inside. Several people smiled at us, seeing my huge size and assuming I was a full-term mama in labor and that this was a happy occasion. The receptionist asked, “Are you in labor?” and I said, “I hope not!” They whisked us through the admitting process and directed us to the 7^th floor, where the birthing center is.

The birthing center is a new, bright, airy facility that’s just past the NICU on the 7^th floor. I paid no attention to the NICU as we walked by, not realizing that would be my second home for the next two months. A nurse met us at the door, took us to a room and had me get undressed and put on a gown. She hooked me up to a fetal heartrate monitor and spent a good bit of time trying to make sure she had both babies’ hearts being measured separately, and not just one baby being heard twice. I was also hooked up to something that kept track of my contractions.

Soon after, the OB came in and did a quick exam: I was 1-2cm dilated and 90% effaced, so he was going to have me started on magnesium to stop the contractions and prevent labor from progressing. He also ordered a steroid shot to help speed up the development of the babies’ lungs. My mind raced as I tried to remember from birthing class and my books what 90% effaced meant. I didn’t think it was good, but I felt confident that the meds he was going to give me would do the trick since I was just barely dilated. At one point, he said to me, “Well, you’re officially on bed rest now!” and I smiled weakly, assuming it would happen at some point but not quite ready to be bedridden so soon. I was also glad that I had gotten the steroids, thinking that was a good precaution so that the babies’ lungs could go on hyper-development-drive, should I deliver early.

B started making phone calls to family and we waited for the meds to kick in. The nurse told me I would start to feel very hot from the magnesium, and soon a slow, tingling heat crept across my face and chest, inching its way through my body and down to my toes. I’m not sure how much time passed, and this is where details start to get fuzzy. I think this is partly from the medication and partly from the trauma of what was happening.

The OB checked in on me again and said it looked like I was still having regular contractions so he was going to increase the dose of magnesium and add something else as well, something stronger. He told us that he was going to have the anesthesiologist and neonatologist come in to speak with us, so we knew what to expect if I did in fact deliver in the next 24-48 hours. At that point I felt the first flicker of fear and shock: “What do you mean? Won’t these meds stop labor and then I can just go on bedrest?” I remember asking, panicked. I think the doctor said something like, “Well, we hope so, but we like to just be prepared.”

While we waited for the docs to come by, the nurse asked if I felt contractions. I wasn’t sure: I felt cramps ripple across me periodically, but was that a contraction? I had no idea, I’d never been in labor before and was praying that this was not it. She looked at the monitor and said that it seemed I still was contracting fairly regularly.

At some point the anesthesiologist came by and explained the process for getting a spinal in case I needed to have a C-section. I don’t remember anything he said except for this: “I’m telling you this in case you do deliver in the next 24-48 hours, but hopefully that doesn’t happen and we won’t meet again until much later in your pregnancy.” Soon after, a neonatology fellow, a young guy who looked to be about our age came in. I don’t remember much at all of what he said. A few phrases floated by me: “27-weekers…vision and hearing problems…learning disabilities…breathing problems…developmental delays.”

About an hour later, the OB examined me again and said I was now 5-6cm dilated. I was amazed: “How can I be 5-6 and barely feel anything more than some cramps? Are you sure?” He said that often with twin pregnancies, the uterus is so stretched and the mother already so uncomfortable that she can go pretty far into active labor before she really starts to feel a lot of pain.

The next thing I remember is that I started to feel like I was leaking. I told the nurse and she had me roll onto my side, and just as I did, a huge gush of fluid came out of me. I started to groan, a deep, primal groan. I knew that my water just broke and I felt myself begin to fade away, deep inside myself, into my core. The OB and a resident were there, trying to find the babies on an ultrasound. They said something about one of the babies being in some distress, and that it looked like they were going to be born today.

At that point, things started to move very fast. The neonatologist fellow was back, telling us that once we got in the delivery room, we would see a lot of people in there, shouting instructions to each other, but not to freak out because that didn’t mean things were bad, it was just the way that they ensured they could hear one another through all the chaos of an emergency C-section. The anesthesiologist came back and I don’t remember what he said, I just remember his demeanor was very gentle, and calm, and kind. The nurse told B he would have to leave while I got prepped and then he would meet me in the OR. The next thing I remember is a sharp sting and then a lot of pressure as I got the spinal.

Once I was wheeled into the OR, the anesthesiologist set up camp next to me and kept up a steady stream of dialogue about a variety of topics, some related and some unrelated to what was happening to the lower half of my body. He was my link to consciousness; I listened fiercely to his voice, for fear that I would slip away otherwise into some remote place. B made his way back into the OR and stood by my side, squeezing my hand.

I felt a lot of pressure and tugging, and then someone cried out, “It’s a girl!” Hannah. Our Hannah Kate was born. 12:49pm, only 4 hours after I arrived at the hospital. I listened intently for what every mother listens for after she gives birth: the sound of her baby crying. But it was silent. And then, moments later, I heard the faintest of sounds, a soft whimper of a cry. Three minutes later, 12:52pm: “It’s another girl!” Oh my. Two girls. We don’t have another girl’s name. We hadn’t gotten that far. We had only chosen a girl and a boys’ name. And no middle names.

They wheeled the girls by us as they raced them off to the NICU and I caught a fleeting glimpse of an isolette and a tiny bundle in the center. The next thing I remember was many hours later, as I recovered in the maternity ward. B had already been up to see the babies while I slept on and off. When he came back, he reported that they were doing okay, but were very, very small. He said this several times: “They’re very, very small.” He handed me a picture of each of them, taken by one of the delivery nurses, which I studied intently. These are my children; my girls. Hannah, and “Baby B.” My two pound, two ounce little girls. How incredibly surreal.

I am now an official blogger!

Today is the day I start the blog I've been thinking about creating for some time now. My husband came up with the idea a long time ago, but I am just finding my way to this now. Mainly, I'm seeking a way to share our ongoing story with friends and family. I'm also hoping to use this as a space to capture my own reflections through this process of raising fraternal twin girls who were born very early (micropreemies who arrived at 27 weeks gestation, weighing only 2.2 lbs each), one of whom suffered a brain injury (PVL: periventricular leukamalacia) and as a result, is experiencing significant motor skill delays.

This first post includes a video montage I recently created in celebration of their second birthday.

I hope you enjoy walking with us on this journey!